TRIPLE POSITIVE GROUP
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ByHisGraceTwice...my bad reaction was to a Taxol infusion that was received at the same time as Herceptin. Since then the Taxol has been discontinued and I only receive the Herceptin. I did continue premeds the first couple of times with Herceptin solo because I was scared but at my last infusion I did it with no pre meds and over 90 mins and did great.
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Angel Eyez welcome to our group. You will find us a very encouraging group. I just found out that I have to have a second round of Kadcyla starting March 27th. Was told a month ago by my oncologist that I was in remission and them pow my 6 mo pet scan showed some highlighted activity.My dr was not happy about that because all my blood work and cancer markers showed nothing. He is being precautions and nipping in the bud anything that could be floating around.
Has anyone else had similar experience?
My work is concerned with all this CoronaV 19 information about people with compromised immune systems that I may get it due to treatment surpressing my immune system. What do ya all think? Should I hold off until this virus stuff settles down. Things are pretty crazy in So Calif. right now.
AngelsGal
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Angel Eyez- AC with no Herceptin?? Are you sure you're HER2 positive, or did you forget to list Herceptin as part of your infusion plan?
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HeartShapedBox,
They NEVER give Herceptin with AC because BOTH can be tough on the heart. Angel Eyez would receive Herceptin with her second chemo, Taxol. I did that regimen, and I'm triple positive.
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I'm curious why some MOs would choose AC for triple positive instead of TCH, choosing NOT getting that start on Herceptin ASAP. Are there cases where AC is actually a preferred method? My understanding is clinical trials have shown TCH/P to be the most effective gold standard, but does that differ for some people getting adjuvant chemo?
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My MO preferred AC + TH/P because more of her patients finished that than TCH/P. I'm not sure if it matters (in the long run) when you start the Herceptin. I essentially had a pathological complete response on AC + TH/P; there's no evidence that TCH/P is superior to the regimen I was on.
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Now that I look back, I DON'T see a clinical trial comparing the two regimens, so maybe my chemo brain made that info up! 😆 Or perhaps I'm just remembering my MO stating his preference for it, and forgetting his reasons why.
@Elaine Thanks for setting me straight!
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My MO said TCHP had a better response than A/C -TH/P. Another doctor said they had the same results.
I'm not sure if it's a preference or his experience with both had him decide one was better.
I opted for TCHP because (1) I wanted to Cold Cap and, was told by both that TCHP would have better results and (2) I had watched YouTube videos of people who did AC-TH/P vs TCHP and the TCHP ladies seemed to handle it better. Ironically, the 3rd MO (that offered me a choice) said TCHP had more toxicity than AC-TH/P
I really don't know if one is better than the other but, I'm handling TCHP rather well so I'm hoping I made the right choice.
@Angelsgal - I'm going through Chemo now so I'm quite scared by Covid-19 but, Cancer scares me more. I've basically holed up in my house, only going to the Drs and made a grocery run last Friday.
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I was given the plan AC + THP by my MO, went to another MO for a second opinion about that plan before starting, and the second MO agreed with the plan and told me that this plan was the standard of care for my diagnosis. The T in THP is Taxotere not Taxol.
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Oh that is interesting. I thought AC + TH/P was always Taxol not Taxotere
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My MO also preferred AC-TH/P over TCH/P. He thought the latter had more toxicity. I did have to have an Echo done to make sure my heart was good but he thought since I was young(er) and very healthy (minus the cancer), that I'd do well with this regimen. Thankfully I had very few side effects through it all. When I was diagnosed I'm pretty sure the AC-TH/P regimen was slightly better than TCH/P but I think it was only about a point or so.
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HeartShaped, I did hear my oncologist mention Herceptin after my AC treatments are complete. I only I listed the information and treatments that I'm currently undergoing or completed. I will be speaking with my oncologist this Wednesday at my second infusion to gain more clarity of the overall treatment process. So therefore, I'm sure I'll be receiving the Herceptin and yes I'm very much Her2 positive unfortunately. I honestly think that I couldn’t do Herceptin at the same time as the AC.
@morrigan_25 thanks I have checked out that forum and have been interacting with that group.
@AngelsGal thanks for welcoming me.
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My 3 month bloodwork/checkup/zoladex injection + 12 month DEXA was truncated to just a zoladex injection this morning. Talked to the NP on the phone yesterday and told her I was doing fine, so we cancelled the face to face. My DEXA and bloodwork will happen when I have my post-Nerlynx checkin with my MO in a couple months. Gives me more time to lift weights so I can hopefully avoid yet another therapy.
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Is that because of Coronavirus?
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Yes, because of Coronavirus. Cancelling was optional, and it was an option I was interested in since I don't see the point of these 3 month appointments to begin with. They are trying to reduce points of contact at my clinic, just in case.
I feel for those of you in chemo right now. As if chemo isn't scary enough.
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Kimmh012 - Hi ! I just had my consultant visit for SGB. I have brutal hot flashes - causes panic attacks. I was watching 60 Minutes TV show and they were talking about SGB helping PTSD, so I wasn't paying too much attention, then at the end it was mentioned originally to prevent HOT FLASHES! Rewind! I had to talk my OBGYN into referring me to a Dr that was familiar with the procedure.
My Doctor said the studies showed it was about 50-50% chance of reducing hot flashes, and if it worked, it would help anywhere between 2 weeks and 6 months. Cost is about $1200- he was sure Insurance wouldn't pay (but I told him if he coded it right, including the word "CANCER" they should pay.) I got the call back a few weeks ago, and I'm scheduled for May 15th. and they said Insurance would pay. Also said I wouldn't need a driver if I bypassed the Versed - which is like taking a baby aspirin for me.
I am very interested! Please keep us advised!
Hapa - thanks for thinking about me - sorry I havn't been here in a while. Yes, I do think some of my hot flashes are caused by anxiety. I take Ativan - and when I have a hot flash come about - I try to relax and do my deep breathing. But that doesn't help for the night sweats.
Everyone try to stay safe!
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rljes, I go for Pain Management consult for SGB, stellate ganglion nerve block on Monday, 3/23 ... I am hoping it works 2 fold for my severe migraines and debilitating hot flashes. I need to take "evidence" for the hot flashes LOL so I am looking for those now.
As far as AC-Taxol H/P vs TCHP, they are both good and they both work well !!!
... I had both, I first had 2 rounds TaxotereCHP, I then switch Onc and he put me on 4 rounds AC, stated because I was TP amplified and then 1 round TaxotereH/P load dose and then switched ONC again because I got real sick when he tried to RELOAD Taxotere HP, should have been just a normal dose not a reload high dosage ... AC was not nice ... with my 3rd Oncologist in Sept 2019, I started normal 12 months/18 rounds of H/P. he told me no more chemo / taxol or taxotere becuase I already received the 6 rounds dosage in 3 rounds. This is when he told me it's in the numbers and wish I started with him because he would have done Taxol / Herceptin low dose weekly shown to be most tolerable and less side effects ...
New information that was presented at the San Antionio Breast Cancer Conference Dec 2019 change alot of regimes... https://www.breastcancer.org/treatment/blog/2019-s...
Some Oncologist have now switch to Taxel and Herceptin low dose 2mg Weekly, no AC no TC, it is now even listed like that in the Herceptin Manual, https://www.google.com/url?sa=t&source=web&rct=j&u...
/www.gene.com/download/pdf/herceptin_prescribing.pd...&ved=2ahUKEwiJ55rJnKXoAhXaVs0KHcUqAb0Q6sMDMAB6BAgFEAY&usg=AOvVaw25oxxRy9LeqchBAgRnf_tO or at Genetech.com I think research has showed they are moving away from Chemo regimes and moving more toward targeted/ Immuniology therapies.It is now longer One Size Fits All, as it should be, we are all the same TPBC but we are all different with ER%, grades, node involvement, etc etc . I think I read there are over 20 subtypes.
Keep Moving Forward!
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kimmh012 - I have chronic migraines as well. The Dr (also pain mgmt) did not mention SGB might reduce migraines. Good to Know!
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rlmessy- thank you. Sad you had the bad reaction to Taxol but glad you tolerate the Herceptin well.
Elaine — Thank you for your input.
my question to the doctors is how do they know the medication is working if they don’t test estrogen levels. I understand some medication makes the cancer cell not eat estrogen but the purpose of other medication is to eliminate estrogen in our body. The doctors test for the level of tumor markers in our blood to see if chemo is working why not test for estrogen levels to see if those medications (tamoxifen, arimudex or Fas??) are working.
I’m new in this world of chemos immunoassay/ targeted therapy — but some of the things just don’t make sense.
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By His Grace,
You can ask your doctor to test for estrogen levels re: the AIs. When I do my bloodwork, my MO just adds estrodial to the list of things they're testing for. But, Tamoxifen works differently than the AIs. It doesn't get rid of estrogen but blocks the effects of estrogen. So testing for estrogen levels while on Tamoxifen doesn't make any sense. Hope this helps!
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Ha - I knew my MO is an idiot. he said there is no such thing as testing Hormone Levels. I need a new one desperately. I cancelled Tuesdays MO appt. He actually called to ask why - I answered " why should I come in, to talk to you about the weather"? He laughed and said see you in 3 months.
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PORTS : Those who still have ports, how often do you go in to have them flushed? What was the LONGEST?
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rljes,
I get my port flushed every eight weeks. That's the longest I've gone without a flush.
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rljies, I hear you. It is scary wondering whether or not the Anastrazole is doing its job. What is the test that measures how well it is working?
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how long do ports stay in for after you finish treatment?
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morrigan,
You can have your port removed anytime after you finish treatment. I've kept mine because 1) I'm paranoid; 2) I go into the infusion room once a month for Zoladex so it's no big deal to get it flushed; and 3) I've never had any problems with it.
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Elaine — have you had any heart troubles with Herceptin
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morrigan - some oncologists would like their triple positive patients to leave their ports in for a period of time after last Herceptin. The rationale behind this is that if Her2+ driven recurrence happens, it generally happens in the first 2-3 years post-treatment. This was the feeling of my particular doctor and I had no issues keeping my port, I had it in for the following six years, but there is nothing wrong with removing your port at the first opportunity - many don't want the reminder and/or their docs have no problem with the decision to take it out.
rljes - I had my port placed at the tie of BMX (I had surgery first) but I due to unrelated skin issues that prompted four additional surgeries, and the discovery of positive nodes requiring ALND, I did not start chemo/Herceptin until 14 weeks after the port placement. My port was never flushed during this time because I think everyone kind of forgot it was there, and I was unaware that it needed to be flushed. It worked perfectly on the first infusion, but I did have it flushed every six weeks post-chemo.
On the subject of testing estrogen - if you are post-menopausal and on AI drugs you can have an extra-sensitive estrogens test done and this gives you a plasma reading of estrogen, but unless you know what your level was before starting you will not know how much the drug has reduced that number. Generally, if you are post-menopausal, you have under 30pg/ml, but this number varies per person, some people even have single digit results on the plasma test when not on an AI. All three aromatase inhibitors Arimidex (anastrazole), Femara (letrozole), and Aromasin (exemestane) work well at significantly reducing the estrogen that is created by the conversion of androgens to estrogen by the enzyme aromatase. When this class of drugs may stop working is when a patient develops resistance, which is usually associated with advanced disease, but can also happen in some early stage patients. This is the reason that when you look at trials for hormonal suppression drugs they are measuring years of disease free survival, and not always the percentage of plasma estrogen reduction. For those on tamoxifen, circulating estrogen is not reduced, rather the drug blocks the estrogen receptors on the breast cells, so estrogen level testing would not be necessary other than initially to double check menopausal status.
byhisgrace - you had asked earlier whether Herceptin is made from a mouse protein - it is a mouse/human chimeric, which as I understand it, is a combination. For dosing, if you receive it every three weeks you receive a loading dose, then a reduced dose that is calculated by BSA (body surface area) - also true for chemo drugs. If you receive Herceptin weekly - either with Taxol only - or with Taxol after AC, I believe you also receive a loading dose, then a reduced dose for the remaining weekly infusions. Most weekly Taxol/Herceptin patients move to every three weeks once the chemo portion is done, so the dose effectively triples at that time through the end of infusions. This is one reason you are weighed each time you come in for an infusion, so they can do the calculation of mg of drug per kg of weight. I personally feel that a slower infusion of Herceptin is preferable to help combat some side effects, particularly any bone or joint pain. All of my Herceptin infusions during my six chemo infusions (Taxotere/Carboplatin/Herceptin) were done over 90 mins. My first Herceptin only was done more rapidly and I had hip and leg pain. My infusion was slowed at my request back to 90 mins, no further problems.
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SpecialK - thank you.
My friend who had Rituxin, which also is a mouse protein based monoclonal antibody, experienced a horrific reaction. Not common to Herceptin or Rituxin. Coronavirus protocol at my infusion clinic now is patient only. As this will be my first ever infusion of any kind, I'm not looking forward to being alone.
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byhisgrace - there is no good time for cancer, but I feel for those of you just beginning treatment or trying to schedule surgery - these are complex times with much uncertainty, with challenges for those providing health care and those receiving it. Hopefully as you begin your treatment those providing your care will be attentive and encouraging, and know we are here to support you in spirit. Hang in there!
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